After a seven-year hiatus, the Huntington Society of Canada’s Vancouver Island and Gulf Islands Chapter swung back into action Saturday (May 27) to host its annual Huntington Heroes Walk to help raise funds and awareness for the rare neurological disease.
On a sunny, almost summer morning, more than two dozen people gathered in Esquimalt’s Captain Jacobson Park for snacks, speeches, and a silent auction before setting out on a five-kilometre walk through the community. For chapter president Hedley Cullen, who was diagnosed with the disease a decade ago, it was an emotional moment.
“I’ve got the butterflies that’s for sure, even though I myself am not going to walk because I would be too slow,” said Cullen. “The chapter sort of drifted along because of COVID, and the last official walk we had was in 2016.”
But after Cullen and event coordinator Susan Nickerson discovered they were distant relatives through an online ancestry group, the chapter began to reform itself and resume regular activities.
Cullen said this year’s event was somewhat hastily organized compared to previous editions, with him and his team putting it together in around a month.
Despite that, and the gap between walks, he said the chapter has already blown past its fundraising goal of $2,500. As of Saturday morning, $3,813 had been raised by the chapter, and with an anonymous philanthropist based in Ontario pledging to match all donations to the society across Canada during Huntington Awareness Month in May and until June 30, that number will only grow.
Despite being a rare disease, with one in every 5,500 people being at risk for developing it, raising awareness and funds is important to the society as there is no known cure, but researchers are working feverishly around the world to try and change that.
“Huntington’s disease is like a combination of Parkinson’s, Alzheimer’s, schizophrenia, and ALS all in one ‘fun’ package,” said Cullen.
Donations can be made online at p2p.onecause.com.
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